Kalydeco and Orkambi: Our Cystic Fibrosis Warriors fight for life saving wonder drugs Orkambi and Kalydeco.
My name is Angela Ryan, my husband is Darren, we have 3 amazing kids, one of whom is our 4 year old daughter Chloe. She has cystic fibrosis. Cystic Fibrosis is a life limiting genetic disease that affects the lungs and digestive system along with many other health complications that are caused by having this awful disease.
there are two drugs called Kalydeco and Orkambi, these two wonder drugs have the capability of giving those who suffer with cf a better quality of life. They are miracle drugs, the closest thing to a cure. They have taken people with cf that were on lung transplant lists and close to their last breath and brought them back from the brink, these same cf sufferers from the transplant lists are now running in marathons! They are tiny miracle pills for our loved ones.
my daughter along with over 500 other cf sufferers need these drugs to survive and the pharmaceutical company Vertex and the HSE have said it's too expensive to give. We are pleading with them to change their minds and they keep telling us they are talking.... While they sit in their offices for weeks and weeks "talking", our cf warriors are suffering. The longer it takes the more damage is being done to these lives. Every day counts.
we are asking for your help. On he 17th February this month, we are holding a country wide candlelit vigil, we ask that you light a candle in your home, post a pic with the caption #cflivesmatter . We are doing this to mark our solidarity and hope for a yes. We are also doing this to remember all those who have lost their lives to cf whom these drugs came too late for. We want to ensure no more lives are lost , we want a cure, we hope for a cure.
Please sign our petition and show your support. We need every signature we can get to make them stand up and listen. We want the citizens of Ireland and our children to be treated equally as our irish proclamation states.
another very wise cf mammy once told me, "We need to take our country back!" There are no truer words.
please help us
Angela Ryan Contact the author of the petition